Has anyone been told they may have Balo’s disease? Supposedly it’s rare and aggressive. I’m waiting to hear from my neurologist to explain why the radiology said I may have this.
Balo’s disease : Has anyone been told they... - My MSAA Community
Balo’s disease
I have not heard of this before. In looking it up, I certainly hope that this is not the outcome of your symptoms. I am a bit perplexed as to why your neurologist would tell you you may have this but not be positive with explanation. I'm sorry to hear that your living with this scare /fear until they figure it out. Sending you hugs & prayers.
What I’ve read it’s similar to MS, but I don’t understand why a Radiologist would tell you. This is the first I heard of this disease. I see how the Radiologist can see the particular lesions but I think your doctor would be the one to tell you.
This is just my opinion and I wish you the best.
In medical matters, one thing that I've learned over the years is not to worry in advance. I've been told too many times that I may have this or that, only to find out that the suspicion was wrong. Now I wait for the actual diagnosis.
I’m waiting to hear from my neurologist. Hopefully Monday or Tuesday. He only treats MS and I don’t know if he’s seen the radiology report yet. He’s not in the office on Fridays. I love the instant access to medical test results but sometimes as this time it’s not so good to get it before the doctor. I’m not overly concerned since the radiology said the findings were non specific and could represent Balo’s disease in that particular area. With this lovely MS monster I’ve learned anything is possible. Appreciate the encouraging words. We’re all so different in how this disease treats us. Happy Easter to everyone. I serve a living savior who will see me through.
I found this about Balo's Disease on the National MS Society site as I had never heard of it but looks like it is closely related to MS: nationalmssociety.org/What-...
Please keeps us updated on what you find out. Good luck.
Jessie
You're in my prayers, no matter what it turns out to be. Keep us posted, won't you?
I wish you the Best and you are in my prayers!
Thank you. I’m still waiting to hear from my neurologist.
Thanks, what is this? Symptoms
I asked my neurologist and he didn’t say anything about it just that my mri is stable but my neurological physical therapist said it’s there but appears the Tecfidera has kept new lesions from forming. From what I see online it says a rare and can be aggressive form of MS.